A woman in a bath towel rubs lotion on her shoulder that creates a boundary from red viruses

The Trials and Tribulations of Infection

Last updated: April 2022

What do you do when contagions are all around you? During this pandemic, the phrase, "wash your hands," reminded me of my mother helping me wash at the bathroom sink. You may remember Big Bird or Sanjay Gupta reminding us to wash our hands while singing happy birthday. Keeping proper hygiene is very important for someone living with lupus. We are more susceptible to infection.

Infections are a beast

I have lived in with my husband for 18 years. Four years ago, we rented rooms in our house to friends/tenants, all of whom love to game like my husband. Hand sanitizer was the grooming ritual of choice around the house. Sanitizer was not enough in 2018. I developed one of the most deadly infections, sepsis, and septic shock. Emory University Hospital's infectious disease team, the same department that diagnosed me with lupus, could not find the cause of my infection. They did, however, save my life.

Sepsis was not my only battle with infection. I developed Campylobacter, a bacterial infection found in livestock, groundwater, and unwashed fruits and vegetables, in 2021. Leave it to me to catch a rare disease. The condition is so rare, that the Georgia Department of Public Health called me every time my specimens were tested to find out where I shopped or ate the previous week. They even asked me about my cat, so I had Gyzmo tested. I lived with dehydration, severe weight loss, fainting spells, bloody diarrhea, and severe stomach cramps for 5 months.

Infections are dangerous for the immunocompromised

My gastroenterologist of 18 years ran some tests a week after I reached out to him. Since the results were taking so long, I was admitted to a rural hospital. My gastroenterologist and the hospital released me without a diagnosis. I was angry when the Georgia Department of Public Health, not my doctors, called me 2 days later with a diagnosis. I was even angrier once I was told that Campylobacter could lead to sepsis. My internist and an infectious disease doctor took over my care.

My second hospital admission, arranged by a new gastroenterologist, was at Emory. Given that I fainted 3 times, suffered severe IBS and possible IBD, lost 26 pounds, and my other autoimmune conditions went into overdrive she wanted to get to the bottom of my symptoms. Since I was on 3 immunosuppressants, allergic to one of the recommended antibiotics, and lived with IBS, my doctors had trouble treating Campylobacter. In the end, I had a new team of 15 physicians from Gastroenterology, Infectious Disease, Allergy, and Internal Medicine trying to make me feel better. This team finally treated me with two antibiotics under very strict supervision due to my history of developing anaphylaxis.

Infection lessons learned

So, what have I learned from my frequent bouts with infection? One, my internal medicine physician of three years and my infectious disease doctor of 5 months, are the best. Two, I need to add an infectious disease doctor to my permanent lupus team because they saved my life in 1990, 2018, and now 2021. Three, I am ultimately in charge of my health. Four, I need to change the way manage my hygiene.

I have learned to change my habits. Since I have lived with Hidradenitis Suppurativa, another autoimmune disease. I use surgical scrub liquid to wash those areas of my body that see the driest skin and cuts. I take a longer shower in the morning and I scrub my body before I go to bed. I change my sheets every week and towels twice a week. I have implemented cleaning rules around the house. I wash my fruits and vegetables thoroughly, and I apply skin barrier creams instead of lotion to my hands, my dry cuticles thanks to Raynaud's, my feet, and my face. Most of all, I have learned to enjoy every waking moment.

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